Dear Canadian Rett Syndrome Community,

 

We are pleased to share that the Canadian Drug Agency (CDA) has accepted Acadia’s request for reconsideration of their initial draft review.

 

The review process will take several months and will incorporate input submitted by Acadia, clinicians, expert committees, and patient advocacy groups.

 

We remain committed to keeping you informed as new information becomes available.

Dear Canadian Rett syndrome Community,

 

 

Today, ORSA Canada submitted an official response to the Canadian Drug Agency’s (CDA) draft recommendation regarding DAYBUE (trofinetide).

 

With the guidance and support of Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders (CORD), we were able to respond clearly and thoroughly to the concerns raised by the CDA, providing additional detail and evidence. We are deeply grateful for Durhane’s leadership and unwavering commitment to equitable access for all rare disease communities.

 

Our submission reflects the lived experiences, urgent needs, and powerful voices of individuals and families affected by Rett syndrome across Canada. We believe that everyone living with Rett syndrome deserves timely and equal access to innovative, potentially life-changing therapies, regardless of location or financial circumstance.

 

As we await the CDA’s final decision, we want to be transparent with our community: ORSA Canada has signed a Non-Disclosure Agreement with Acadia Pharmaceuticals. We remain committed to transparency with our community while also honouring our agreement with Acadia. Ensuring the best interests of our community continues to guide everything we do. We will keep you updated as we are able to share more.

 

For official information and ongoing updates, please visit www.rett.ca. To stay connected, we encourage you to become a member to receive our email communications.

 

Thank you for your continued support, advocacy, and trust.